Hey Everyone! For those of you who are new, here’s my story! To everyone else, thanks for following along and continuing to help me! It means the world to me
As many of you know, my nightmare began in 2013, following a major car accident. I began experiencing debilitating pain, nausea, and uncontrollable vomiting and truly thought I was going to die. What I didn't realize at the time was that these horrifying symptoms were going to haunt me for the next 4 years.
It took about a year before I received my first diagnosis: chronic pancreatitis. After receiving the news, I was rushed into surgery for a small procedure to open my pancreatic ducts in order to help the pancreas function properly. This soon turned into 3 additional procedures and an emergency surgery. Eventually, after no relief and continuous failed procedures I decided it was time to look for other options. It was at this time that I met a new GI doctor who found a rare vascular disorder via CT Scan. A doppler ultrasound confirmed the diagnosis of Median Arcuate Ligament Syndrome (also known as MALS).MALS is the compression of the celiac artery which supplies blood flow to your upper abdominal organs, which could easily explain my pancreatitis diagnosis. This was sadly just the beginning of my journey.
Because MALS is a vascular issue (think arteries and veins), I was sent for additional vascular testing. Upon reviewing the results with my new surgeon, I was diagnosed with multiple vascular compression syndromes: Median Arcuate Ligament Syndrome(compression of your celiac artery which effects your upper abdominal organs), Nutcracker Syndrome (compression of your left renal vein which effects your left kidney), and the main condition Superior Mesenteric Artery Syndrome. Superior Mesenteric Artery Syndrome (SMAS) is a condition that occurs when the duodenum, the 1st part of the small intestine, is compressed between the aorta, (main artery in your body) and the Superior Mesenteric Artery. The compression causes partial and/or complete blockage of your stomach causing immense pain and bloating after meals. In my case, the Superior Mesenteric Artery itself was also compressed causing lack of blood flow to many vital organs. SMAS is a very rare vascular compression syndrome affecting 0.013% of the population. It often goes undiagnosed until patients experience major organ damage and debilitating symptoms, at which point it is often too late for surgery. On February 27th of 2017, due to the complexity of the syndromes, we decided to proceed with surgery in Virginia.
Half a dozen weeks went by and I was still in extreme pain and experiencing the debilitating symptoms of extreme pain, nausea, constant vomiting, and chronic fatigue. It was then I began to realize something was very wrong. I ended up back in the hospital the following week and was rushed back to Virginia. It was then that I received the devastating news that would change my life forever. The surgery had failed. At the same time, I discovered that my surgeon was retiring and that he would no longer follow my care. So, my search for a new surgeon began.
I quickly realized that finding a new surgeon would be no easy task. My previous surgeon was the only surgeon in the US that was able to do the SMAT (Superior Mesenteric Artery Transposition). Due to the rareness of these illnesses, there are very few doctors who treat these illnesses in the United States, let alone those who treat it successfully. That being said, I was referred to the only other surgeon in the world that is known to have performed the same operation I had previously, Dr. Sandmann, who is located in Germany. He is truly a miracle worker and is able to deal with multiple compression syndromes in only one surgery. He is also the surgeon who originally trained my previous surgeon. So, after extensive research, I began the pursuit of my journey to Germany.
After several months of fundraising, I went to see Dr. Scholbach on November 2nd. Dr. Scholbach is the medical imagining specialist that Dr. Sandmann works with in Leipzig, Germany, whom has developed a new doppler ultrasound technique to specifically identify multiple vascular compression syndromes in one study. Due to the imaging specialist being outside of the USA, my insurance declined to pay for the imaging and consultation. I had to pay for this entire trip out of pocket, which cost me around $6,000 in total, including travel and the scan itself.Dr. Scholbach was not only able to confirm that I still have SMAS, NCS, and MALS, but was actually able to diagnose 5 compressions in total. He explained that there is literally no blood flow going to my abdomen. I was additionally diagnosed with Iliac Artery Compression which is also called May Thurners Syndrome. I also have a very severe case of compression on my iliac artery which is also causing Pelvic Congestion Syndrome. After my appointment, I met with Dr. Sandmann to discuss the results of my scan. Due to the severe nature of my compressions, he wanted to do surgery immediately that week. Unfortunately, the hospital will not let him perform without a deposit of $30,000, which covers the cost of surgery. Sadly, I did not have the money for the deposit and had to return home. After waiting a month, I was successfully able to raise enough money for surgery! Dr. Sandmann was able to successfully correct all of the compressions and, after a long and grueling recovery, we thought my nightmare was over! Unfortunately this was not the case.
Around 2 years after my initial procedure with Dr. Sandmann, I began experiencing all of my symptoms again, however this time they were progressing rapidly. I was able to make it to Germany foranother scan with Professor Scholbach that showed 3 of my compressions have returned in a new formation. I won’t bore you with the medical jargon and what not but essentially, even though the original procedure was successful, some new compressions have formed and have caused a reoccurrence of SMAS, MALS, and PCS.
At this point, surgery is my only option and without it I will die. I have gone from a determined and very active young female to a sickly individual who rarely leaves her home unless absolutely necessary. I have had to medically withdraw from college and have had to put my dreams of being an English teacher on hold. Time is running out and I need all the help I can get.
My current goal is to raise $50,000 as quickly as possible to cover my deposit for surgery, as well as transportation, food, and lodging costs. Any remaining funds will be used to pay for my medical bills as well as donated to the SMAS support group to help future cases like mine.
I want to thank everyone in advance who has taken the time to read my story, share, and support my lifesaving surgery and journey to healing in Germany. Every penny counts, no amount is too little, and even if you are unable to contribute, please share this page with your friends, family, and coworkers. It truly means the world to me to have everyone's support and I cannot express my gratitude.
If you would like to make a private donation, you can message me on Facebook or contact me at [email redacted] .
Thank you all again for taking the time listening to my story.
- Denise Manning
- Kate Molinelli